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Life’s a mystery

The doctors had no clue what the hell was going on with me. (GBS is very rare, 1-2 in 100,000.) They began to run tests. They did MRIs, spinal taps, x-rays, ultrasounds, you name it, they did it. At the beginning there was concern that I had Multiple Sclerosis (at 19 this is a terrifying thought, well at any age this can be terrifying.) Finally they did an Electromyogram that resulted in a diagnosis after they shocked my leg and got no response. Oh, I should add, they had no idea which floor of the hospital to put me on because they didn’t know what was wrong, so I got bounced from place to place for the first 3 days (it took them 3 days to diagnose me.) I slept in the room where they set broken bones, then in another random emergency room, then in some room in a hidden hallway. Finally, after diagnosis I was put into my first more permanent room of many. I was put on the neuro ward alongside kids who had just had major brain surgery, etc. Since the risk of this floor was so high, each patient had their own room with a nurse’s station directly in front of their room (1 nurse to 2 patients), so pretty much I was on display for a week in this room.

Although we had a diagnosis, we were still scared as hell. They had no idea how far the GBS would progress, what bodily functions it would affect, etc. Everyday they did lung capacity tests to ensure the GBS hadn’t started to affect my lungs, and they monitored my ability to chew and put me on a liquid diet for a few days to be safe. Since there’s no treatment for GBS, I was given 3 days of Intravenous immunoglobulin to help speed up my recovery. During this first week I was in extreme pain. I would wake up crying in the middle of the night. They gave me morphine, the pain was so bad. It was the weirdest pain too, it was like a ‘growing pain’ in my back, I just couldn’t get comfortable and it would ache so badly. I couldn’t really use my legs, had very little upper body strength, and for this first week both sides of my face had become paralyzed, hence my liquid diet. The only time I left my bed was to go to the washroom, and even then I had a walker that I used to take the 3 steps to the washroom. Nurses had to help me go, and I had to have sponge baths because I couldn’t get to the shower.

I should also mention I had a mild case of GBS. One of my nurses told me his story, his entire body was affected and he had to be incubated and fed through a straw. In my case, only my legs and face were affected. I was lucky. Also, I’ve heard stories of people who never fully recover, in one case a woman cannot feel hot/cold with her skin anymore because of GBS. My remaining effects are nowhere near as serious, and I’m grateful for this fact.

After this first week, when it was determined that my GBS would not progress anymore, I was moved to a more general ward to recover some more before I went to rehab. I spent another week in this general ward, sharing a room with an older lady. I began using my walker and doing laps around the ward. I also had my first shower this week, though I blacked out on my walk there. It was the weirdest thing, I couldn’t see, but I could talk and hear, but everything sounded like it was very far away, a nurse found me wandering around and led me back to my room and they put me on bed rest for the rest of that day. I would say that this week was the toughest. Now, it was just a waiting game, would my legs return to normal? Would my face? My left side had already come back, it was only “out of commission” for the first week, the right side however… well, you’ll see. With all the unknown, and loneliness that was hitting, I drowned myself in books and worked really hard to stay positive.

At this point, I have to thank my stepdad, without him I think I would have become very depressed. The first three nights when I was undiagnosed, he slept on a chair outside of my room, he only left to shower and bring me more clothes. He was amazing. His boss was also amazing, letting him work in the morning and then spend the afternoons with me. We would just sit in the room, we ran out of things to talk about very quickly, but just having him there made it so much easier. We refused to let my mom come back from Afghanistan, there was nothing she could do and we knew that I wouldn’t get worse, and she only had a few more weeks, so we made her stay. It was one of the hardest parts for us, telling her to not come home.

After two weeks, my legs were getting a little stronger, I would walk with my walker for short bursts, then would need to rest, but I could walk, that was enough for me. Close friends came to visit, my dad, stepmom and brother came to see me. It was now time for the waiting game. The hardest part was soon to come, rehabilitation. And this was when my mom came home. Talk about emotionally draining. It was so great to see her, and when she saw me, you could almost see the heartbreak in her eyes. It was an emotional reunion, but boy was I glad to see her. At this point, I was allowed to go home on a weekend visit. They ‘checked me out’ and brought me home for a night. They moved my bed to the main floor because I wasn’t strong enough to climb the stairs. I only did them once, to have a shower with my special shower chair. Woot! A little freedom!